1. < Head & Neck Cancer

squamous cell in throat

Posted by jimchardy @jimchardy, Sep 30, 2018

I started developing a lesion in my throat about two months ago. It has recently become more aggressive to the point it has opened a hole in the back of my throat and liquids come out my nose when I swallow.

Any advice on this conditions implications would be appreciated..

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jimchardy | @jimchardy | Dec 11, 2018
In reply to @loli "Hi Jim, It is good to hear from you again. I had 40 radiation treatments five..." + (show)
@loli

Hi Jim, It is good to hear from you again.
I had 40 radiation treatments five years ago, so I know what you are going through right now. I was very successful in treating the burns with aloe. I started with aquaphor, tons of it just right after radiation; but later in the day, I would rest with slices of fresh cooled aloe on the radiated area. I would even cut a small piece, and let it melt in my mouth. If you are willing to experiment with this, I can give you further instructions.
Best to you, Loli

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Thank you. I would appreciate your instructions regarding use storage of aloe. We grow aloe plants and this could prove valuable to us.
Jim

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wayno1234 | @wayno1234 | Jan 3, 2019

Under went 7 weeks of chemo once a week and 7 weeks of proton radiation for a base of tongue cancer that was inside the tongue and so not really operable. Designated as Stage II HPV-16 squamous cell - had an enlarged right lymph gland and a partially sowllen left lymph gland.
Almost impossible to swallow about 2 weeks into the treatment as the tumor was getting larger and had the stomach tube put in. Saved my life.
Finished treatment on 7 Dec and stayed a few days before traveling 5 hours home. Originally was told that I could start swallowing and expect some relief about 2 weeks into recovery, but then was told that 1st 3 weeks get progressively worse and then will start to improve. The second advice was correct. Make sure who you listen to even at Mayo.
Supposedly prognosis is very good, but am just starting into the 4th week and the phlegm is finally getting a bit better. Staying with 15 ml of Tussin very 4 hours or so, and some child's Benadryl 1-5 ml as need to help dry up.
Pain - got off the 12mcg fentanyl patch a day or so ago, and take liquid adult tylenol 1000 ml every 6 hours per doctor. Adding oxycodone if needed to sleep.
Throat pain a little less, but even small sips of water go down hard. ANYTHING too warm burns going down, ie, tried a small sip of chicken broth tonight.
Trying to dry swallow and it's painful - but as I was told, gets a little better every few days.
Hoping to eat mushy stuff in a week or so. Had looked forward to grilled ham and cheese 6 weeks after treatment - doesn't seem possible right now...

Doc said 7 weeks plus for normal food but to get on the tongue exercises - they will help.

Feeding tube : KEEP that thing SNUG else food will leak out and irritate the skin where the surgeons tried to put 'button' stitches to hold the tube against the stomach wall. Didnt watch it and missed washing until late in the day and the dried food had irritated the skin where the scar was form the button, it started to bleed. CLEAN the area 3 times a day if need be. Ended up washing well and putting some bacitracin on the area and it helped tremendously.

Hope the 90% five year survival the doc told me applies to me still - that they told me at the beginning of treatment. Expect to go longer but will have to see.

REPLY
1 reply
Maureen, Alumna Mentor | @alpaca | Jan 4, 2019
In reply to @wayno1234 "Under went 7 weeks of chemo once a week and 7 weeks of proton radiation for..." + (show)
@wayno1234

Under went 7 weeks of chemo once a week and 7 weeks of proton radiation for a base of tongue cancer that was inside the tongue and so not really operable. Designated as Stage II HPV-16 squamous cell - had an enlarged right lymph gland and a partially sowllen left lymph gland.
Almost impossible to swallow about 2 weeks into the treatment as the tumor was getting larger and had the stomach tube put in. Saved my life.
Finished treatment on 7 Dec and stayed a few days before traveling 5 hours home. Originally was told that I could start swallowing and expect some relief about 2 weeks into recovery, but then was told that 1st 3 weeks get progressively worse and then will start to improve. The second advice was correct. Make sure who you listen to even at Mayo.
Supposedly prognosis is very good, but am just starting into the 4th week and the phlegm is finally getting a bit better. Staying with 15 ml of Tussin very 4 hours or so, and some child's Benadryl 1-5 ml as need to help dry up.
Pain - got off the 12mcg fentanyl patch a day or so ago, and take liquid adult tylenol 1000 ml every 6 hours per doctor. Adding oxycodone if needed to sleep.
Throat pain a little less, but even small sips of water go down hard. ANYTHING too warm burns going down, ie, tried a small sip of chicken broth tonight.
Trying to dry swallow and it's painful - but as I was told, gets a little better every few days.
Hoping to eat mushy stuff in a week or so. Had looked forward to grilled ham and cheese 6 weeks after treatment - doesn't seem possible right now...

Doc said 7 weeks plus for normal food but to get on the tongue exercises - they will help.

Feeding tube : KEEP that thing SNUG else food will leak out and irritate the skin where the surgeons tried to put 'button' stitches to hold the tube against the stomach wall. Didnt watch it and missed washing until late in the day and the dried food had irritated the skin where the scar was form the button, it started to bleed. CLEAN the area 3 times a day if need be. Ended up washing well and putting some bacitracin on the area and it helped tremendously.

Hope the 90% five year survival the doc told me applies to me still - that they told me at the beginning of treatment. Expect to go longer but will have to see.

Jump to this post

@wayno1234 Sounds as if you are coping very well. I agree about the worsening discomfort/pain in the 2-3 weeks after treatment. Apparently the radiation keeps working. And from what I know HPV throat cancer is eminently curable so you have a good life to look forward to once the side effects wear off. I had non-HPV head and neck cancer, mainly surgery but have also endured the radiation which was a big ordeal with a big improvement a couple of weeks after treatment. Mine was not to the throat though but to the jaw area. Congratulations on getting through this and taking such good care of yourself

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1 reply
wayno1234 | @wayno1234 | Jan 4, 2019
In reply to @alpaca "@wayno1234 Sounds as if you are coping very well. I agree about the worsening discomfort/pain in..." + (show)
@alpaca

@wayno1234 Sounds as if you are coping very well. I agree about the worsening discomfort/pain in the 2-3 weeks after treatment. Apparently the radiation keeps working. And from what I know HPV throat cancer is eminently curable so you have a good life to look forward to once the side effects wear off. I had non-HPV head and neck cancer, mainly surgery but have also endured the radiation which was a big ordeal with a big improvement a couple of weeks after treatment. Mine was not to the throat though but to the jaw area. Congratulations on getting through this and taking such good care of yourself

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Thank you and CONGRATS on making it through yours. Hope yours is long term survivable as well.
The current thick mucous problem is a bit alleviated by 10-15 ml of the Tussin, My opening at the base of the tongue still allows some seepage of mucous when I fall asleep leaning back - am hoping that time will alleviate that..

Thanks again!

REPLY
1 reply
jimchardy | @jimchardy | Jan 6, 2019
In reply to @wayno1234 "Thank you and CONGRATS on making it through yours. Hope yours is long term survivable as..." + (show)
@wayno1234

Thank you and CONGRATS on making it through yours. Hope yours is long term survivable as well.
The current thick mucous problem is a bit alleviated by 10-15 ml of the Tussin, My opening at the base of the tongue still allows some seepage of mucous when I fall asleep leaning back - am hoping that time will alleviate that..

Thanks again!

Jump to this post

Thanks, Wayno. Last night I suffered an unfortunate relapse and felt like I was ready to give up! Couldn't breathe right, felt terrible all night. I stayed in bed for nearly 20 hours! Feeling okay this morning, but still have no appetite and am losing lots of weight. Glad I have only two treatments left and will be receiving hydration infusions for at least another week.

REPLY
2 replies
Steve | @hoppy | Jan 6, 2019
In reply to @jimchardy "Thanks, Wayno. Last night I suffered an unfortunate relapse and felt like I was ready to..." + (show)
@jimchardy

Thanks, Wayno. Last night I suffered an unfortunate relapse and felt like I was ready to give up! Couldn't breathe right, felt terrible all night. I stayed in bed for nearly 20 hours! Feeling okay this morning, but still have no appetite and am losing lots of weight. Glad I have only two treatments left and will be receiving hydration infusions for at least another week.

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You hang in there it will get better I promise

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 6, 2019

Hi @wayno1234, I want to add my welcome. Your experience and information you shared about proton beam therapy and recovery is super useful. I think you might have some further tips and thoughts to add to other discussions in the Head & Neck Cancer group and may be interested in some discussions in the future as your recovery continues and you transition to food.

* Trach after esophageal cancer https://connect.mayoclinic.org/discussion/trach-after-esophageal-cancer/
* Anyone Caring For A Feeding Tube Patient? https://connect.mayoclinic.org/discussion/anyone-caring-for-a-feeding-tube-patient/
* Feeding tube removal https://connect.mayoclinic.org/discussion/feeding-tube-removal/
* Soft Food Suggestions https://connect.mayoclinic.org/discussion/soft-food-suggestions/
* Esophageal cancer....transitioning to food https://connect.mayoclinic.org/discussion/esophageal-cancer-transitioning-to-food/
* Teeth and Head & Neck Cancer https://connect.mayoclinic.org/discussion/teeth-1/
* Life after head and neck cancer treatment https://connect.mayoclinic.org/discussion/life-after-head-and-neck-cancer-treatment/
* Depression and anxiety, and Head & Neck Cancer https://connect.mayoclinic.org/discussion/depression-and-anxiety-1/
* Diagnosis and discussions: HPV 16 Squamous Cell Carcinoma https://connect.mayoclinic.org/discussion/diagnosis-and-discussions/
* Video Q&A about HPV-related Tongue and Tonsil Cancer https://connect.mayoclinic.org/webinar/video-qa-about-hpv-related-tongue-and-tonsil-cancer/

REPLY
wayno1234 | @wayno1234 | Jan 6, 2019

Sorry to hear - do your best to keep up the feeding. It IS a struggle - alternative is worse. Am sure doctors monitoring your weight, blood and other areas. If you can eat at all - keep it up - I am still on a stomach tube 5 weeks after treatment and would kill for bacon, eggs and toast. Actualy, finally got a soft fried egg down today - 1st time - really sore throat now all day, but wil have to keep it up. No one told me I'd have to stretch out my throat from scratch again after treatments. You WILL have better days - not yet, but they are coming. Food helps if you can eat - I had to take extra sodium, magnesium, D3, and other vitamins to alleviate some of the symptoms. Good luck!

REPLY
1 reply
Steve | @hoppy | Jan 6, 2019
In reply to @wayno1234 "Sorry to hear - do your best to keep up the feeding. It IS a struggle..." + (show)
@wayno1234

Sorry to hear - do your best to keep up the feeding. It IS a struggle - alternative is worse. Am sure doctors monitoring your weight, blood and other areas. If you can eat at all - keep it up - I am still on a stomach tube 5 weeks after treatment and would kill for bacon, eggs and toast. Actualy, finally got a soft fried egg down today - 1st time - really sore throat now all day, but wil have to keep it up. No one told me I'd have to stretch out my throat from scratch again after treatments. You WILL have better days - not yet, but they are coming. Food helps if you can eat - I had to take extra sodium, magnesium, D3, and other vitamins to alleviate some of the symptoms. Good luck!

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It will seem like forever but trust me you will do this

REPLY
1 reply
wayno1234 | @wayno1234 | Jan 6, 2019
In reply to @hoppy "It will seem like forever but trust me you will do this" + (show)
@hoppy

It will seem like forever but trust me you will do this

Jump to this post

thank you, noticing changes every 3-4 days, vs 'each day' - a little forward, a little back, little more forward - looking slowly but steadily better!

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